1st week of chemo

Dear Sweet Holly.....the Bl2 pills won't work...because you don't have your ileum and thats where Bl2 gets absorbed.....i know you hate needles ...don't look...its not even a pin prick..honest...you don't even feel it. And my pharmacist said there is a new product of Bl2 that you place under the tongue and gets absorbed right into the system....Thats really easy....please have your pharmacist check it out.
So happy to hear things are getting stable at the moment....hugs...Pat

Hello Friends

It has been a while since I added to this thread so I'll get caught up....
I did finish the last round of chemo - 4 months cisplatin/gemzar was not easy but it is done with none missed. I finished it 3 weeks ago and I seem to be over anious to start feeling better and more like myself.My hair is still shedding plenty but I did not loose it all
I had a still film done on my shoulder bone tumor this week (8 weeks since the last one and 4 weeks since ending chemo as Dr and I agreed waiting 3 months was too long in this case). They are calling the tumor "stable" - so I am not facing radiation/surgery for it now The 1st week of October I go back for my 6 month check and scans etc, so we will know what is going on with the lymphnode then. One note here, the lymphnode is NOT operable - it is too close to the Aorta to even biopsy. So radiation would be the only treatment option. As much as I want proof it is not mets, I am not ready to face it yet if it is. I had 5 surgeries, 2 hospitalizations for C Diff and 4 months of chemo since Jan 31 this year and it is only August now - I need a break and some heal time.
I have had difficulty getting my B12 up there - I refuse the shots. ( If you didn't know - I am part chicken and sprout feathers when facing a needle). I orally take a mega dose of B12 and am hoping that will work. The oily gel nasal spray will be my next step if the pills don't cut it.
Wendy - I saw the bladder cancer write up in Women and Cancer magazine - was glad to see the exposure to this disease there. I was especially proud to read their interview with you, knowing how many more you will reach with knowledge, comfort and friendship. Thank you for all you have done and are doing,Love you all, Holly

www.cancercompass.com/message-board/message/all,1991,0.htme a website for urachal survivors...... there is interesting information on this site...check it out.
There is also a new agent for this type of cancer called Irinotecan which you can check out at content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ArtikelNr=91635&Ausgabe=231717&ProduktNr=224282&filename=91635.pdf
Hugs....Pat

Hi Holly,

There is some info from MDAnderson both urachal and micropapillary bladder cancers, they are doing a clinical trial for urachal and small cell (another rare type). You can see what drugs they are using, and how to access the trial protocol.

blcwebcafe.org/raretypes.asp#ubc

This would be something to discuss with your doctor if you are against continuing the present chemo protocols. I would tend to agree that if you've developed obvious spread since beginning treatment a new approach should be discussed. Trust your instincts, I always say.

Wishing you well,
Wendy

Hi Holly
It sounds like you are having a real time of it once again.I am sure the people at the Mayo know what they are doing everything you read about them is so positive.It does seem mad though if you particular cancer does not respond to chemo to keep giving you it.I hope the doctor your seeing in the next few weeks makes some sense of it all for you.
These check ups send us all into a state of fear I am always convinced they will find something lurking.At least they say the node is operable but it must seem like the last thing you want to have to go through right now.
Take care I am sorry I am not around much nowadays but I do try and check in every few days and am still always thinking of everyone.
LOve and good wishes Claire x

Holly did you get my PM? Pat